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June 2003

News for the investigators, staff and associates of the Schiefelbusch Institute for Life Span Studies

Karen Henry, editor kahenry@ku.edu

The Life Span Institute at the University of Kansas

1052 Dole Human Development Center

1000 Sunnyside Avenue

Lawrence, KS 66045-7555 (785) 864-4295 TDD (785) 864-5051

Back issues at LSI web site: http://www.lsi.ku.edu/lsi/lifeline/index.htm

Submit your presentations: A calendar and archive of seminars, presentations and training by and of interest to Life Span investigators begin at http://www.lsi.ku.edu/lsi/internal/seminars/index.htm. Send your submissions to jessica@ku.edu.

Contents

Features

Fragile X grants signal significant new collaboration and research area
RTCIL researchers challenge housing industry, community to improve tornado safety and evacuation
Special Feature: Students at the Life Span Institute ñ LSI Academic Training overview; Recent student honors; Kansas AAMR Call for Student Presentations; RTCIL NIDRR student view
KU Work Group considered for collaboration with World Health Organization
Travis Thompson accepts position at Minnesota autism organization
Celebration of Dick Schiefelbusch’s 85th birthday and future of Life Span Institute set for July 19
Schiefelbusch to appear at the Dole Institute for Politics dedication activities
Life Span in the news

Honors

Publications

Presentations

Other professional activities

Central Office News & Announcements

Research, Design & Analysis First Annual RDA Summer Institute on Structural Equation Modeling

Project Development June update

Two grants launch new collaboration for KU disabilities researchers

Researchers at the University of Kansas Life Span Institute will embark on a new area of research with the University of North Carolina at Chapel Hill to study Fragile X syndrome (FXS), the most common inheritable form of mental retardation.

Steven F. Warren, Life Span Institute director, will lead the projects at KU that signal a new collaboration with the North Carolina university renowned for Fragile X research.

KU will join North Carolina as its research partner in a five-year $6 million National Institute of Child Health and Human Development (NICHD) grant that establishes a designated national Fragile X research center focusing on how families adapt to having a child with FXS.

Warren, along with KU Associate Research Professor Nancy Brady, has shown how crucial parenting style is to childrenís language development—particularly for children with developmental disabilities.

As one example, the two researchers will study twenty families to determine if and how children with FXS are parented in comparison to their siblings and how this affects their later development.

“Children with FXS can be more irritable, hyperactive and impulsive compared to typically developing children,” Warren explained, “Even parents who are warm and responsive find these behaviors challenging.”

But Warren and Brady also believe that parents can change their parenting style to help their children develop critical language and reasoning skills. They will test this hypothesis by developing optimal parenting skills in those parents in the study who show less responsiveness to their children.

The second collaborative project, which includes the University of California at Davis, is a three-year NICHD grant to plan a multistate screening of one million newborns for FXS.

Although it is the most common inherited form of mental retardation, no one knows exactly how common. Finding out the true prevalence of the single-gene disorder is the first order of business.

FXS affects a single gene on what is termed a “fragile site” on the X chromosome and occurs in both males and females, but in males more frequently and severely.

Children with FXS, unlike those with Down syndrome, do not have obvious identifying physical features as infants. As children with FXS get older, doctors may confuse their developmental or behavioral symptoms with other disorders until genetic tests are performed. Most children are not diagnosed until they are at least two years of age.

This means that little is known about the early development of children with FXS, children miss out on early treatment and therapies, and families may have more than one child with FXS without knowing that they are at risk.

According to Warren, the researchers who are planning the FXS universal screening are pioneering new directions in health policy.

“Currently, only disorders that can be treated are routinely screened for,” he said, “but the rapid advances in genetics is pushing us as a society to consider the ethical, legal, and technical implications of knowing more about our individual genomes as early as possible.”

Carolina Fragile X Project http://www.fpg.unc.edu/~fx/.

KU disabilities researchers say housing inadequate for tornado evacuation

People with mobility impairments need safe places to evacuate during tornadoes but for some there may be no safe place to go because of the structural inadequacies of some existing and new housing, according to University of Kansas disabilities researchers who are conducting a national study of disaster planning and response.

Michael Fox, associate professor of health policy and management at KU, co-directs the three-year grant, Disaster Preparation and Emergency Response for People with Mobility Impairments, with Glen White, director of the Research and Training Center for Independent Living (RTC/IL). The grant is funded by the Association of Teachers of Preventive Medicine through the Centers for Disease Control and Prevention.

“A safe place to evacuate is most critical in retirement communities where many people with mobility impairments live,” said Fox, “If there is no central shelter or if it is only accessible by stairs, these residents are clearly very vulnerable if a tornado strikes the dwelling.”

“The issue of accessible safety during natural disasters in Douglas County, Kansas appears to be very similar in places like Bay County, Florida or Redwood, Minnesota, two counties included in the study,” Fox said.

“The Americans with Disabilities Act Accessibility Guidelines (ADAAG) requires areas of rescue assistance during fires in newly constructed public accommodations, but does not require safe rooms for tornadoes,” Fox said.

He added that ADA requirements do not apply to single-family housing and that neither federal, state or local Fair Housing laws require safe rooms or tornado shelters in single or multi-family housing. For example, Lawrence city building codes do not currently require that a safe room be included in new single or multifamily construction.

But the importance of safe rooms is gaining support.

The Federal Emergency Management Agency provides guidelines for construction of a safe room, according to Fox, and locally, Tenants to Homeowners, Inc., has taken the initiative to include a safe room in all new housing it builds.

A safe room is a small windowless room, either completely encapsulated in concrete- walls, ceiling and floors - or a prefabricated steel structure located inside the home. Safe rooms can range in size from that needed to protect an entire retirement community, as in Osage County, Okla., to something small enough to protect a family, as in White’s home in Lawrence.

“We strongly recommend that homebuilders, city planners, groups like Tenants to Homeowners, Inc. and Habitat for Humanity, realtors’ associations and other interested stakeholders, develop, review, and implement tornado shelter options, for all new single family dwellings,” said Fox.

The Home Builders Association of Tulsa, Oklahoma, for example, has received national recognition and awards in their efforts to make Tulsa a disaster resistant community.

The RTC/IL is planning to convene a community forum for the exchange of experiences and ideas to promote accessible disaster safety planning within Douglas County this summer.

“Cataloging the experiences of members of the disability community who went through this storm now, when it is fresh in their minds, will be important so that lessons can be learned and improved policies proposed,” Fox said.

Special Feature: Students at the LSI

LSI Academic Training Report Online

Did you know that the LSI supports fully fifteen percent of all KU GRAs? Find out more about our several academic programs, including our two multidisciplinary degree–granting programs and our several unique post-doctoral training experiences in a snapshot of LSI academic training at http://www.lsi.ku.edu/lsi/internal/lsi_training.html.

Recent Student Honors

Monika Suchowierska and Katherine L. Stewart, and their mentor, Kathryn J. Saunders, received the Student Paper Award from the Verbal Behavior Special Interest Group at the recent meeting of the Association for Behavior Analysis (San Francisco). Their paper was entitled: Preschool Children Show Recombinative Generalization in Spelling Three-Letter Words.

Todd McKerchar, research assistant with the LSI’s Biobehavioral Measurement Core, was awarded the first place prize for his graduate student paper, Operant microcatalepsy in naÔve and haloperidol-experienced rats: comparison of haloperidol and risperidone, from the Division for Behavioral Pharmacology of the American Society for Pharmacology and Experimental Therapeutics.

Call for Student Presentations

Looking for a chance to present your work? Build your vita?†

Network with professionals in the disability field?

If so, consider presenting your work at Kansas AAMR’s strand at the INTERHAB Conference!

The Kansas chapter of the American Association on Mental Retardation (AAMR) is soliciting students to present applied research related to people with mental retardation at Kansas AAMR’s strand at the annual INTERHAB Conference in Kansas City, October 1-3, 2003. The presentation must be original work, conducted by the student, including undergraduate, masters, residency, or internship projects, doctoral research or dissertations, and can be from any field pertaining to people with mental retardation (education, vocational rehabilitation, psychology, speech-language, medicine, dentistry, occupational or physical therapy, or other related fields).

Three students will be selected to participate and invited to conduct a 15-20 minute presentation of their research at the conference.† Presentations will be judged and awards provided with first place receiving $100 and a one-year membership to AAMR, second place, receiving $25 and a one-year membership to AAMR, and third place, receiving a one-year membership to AAMR.

This opportunity is an excellent way for students to practice presenting at a conference, develop contacts with people in the disability field, and build their curriculum vita.

If you are interested, please complete the attached form, and submit it along with a 500-800 word abstract of your research to Susan Palmer, by email at spalmer@ku.edu, or by snail mail: Susan Palmer, Beach Center on Disability, 3136 Haworth Hall, 1200 Sunnyside Ave, Lawrence, KS† 66045-7534.† If you have questions, Dr. Palmer can be reached by telephone at (785) 864-0270.†

The deadline for submission is August 20, 2003.† Students will be notified by email by September 3, 2003, regarding the status of their submission.

RTCIL NIDRR Scholar reports on trip to Washington

Note: Nicole Denney is a NIDRR Scholar who joined the RTCIL this semester. The NIDRR Scholars Program provides internships in disability and rehabilitation research for undergraduate students with disabilities to prepare them for careers in disability and rehabilitation research. The duration of the internship is one year and the students are required to work 20 hours per week.

Nicole is part of RTCIL Director Glen White’s research group who attended the National Council on Independent Living conference in Washington, D.C. June 3-9. The group met Dr. Troy Justesen, Associate Director for Domestic Policy, who advises President Bush on disability policy and Steven Tingus, Director of NIDRR and participated in the March to the Capitol.

My name is Nicole Denney and I am a National Institute on Disability and Rehabilitation Research (NIDRR) Scholar at the University of Kansas. I recently attended the National Council on Independent Living (NCIL) conference in Washington, DC It was my first time to travel to our National Capitol so I was really looking forward to the trip. This trip surpassed my expectations- it was amazing. I was able to see all the beautiful monuments that are in Washington, DC We even had an opportunity to visit the White House. While we were at the White House we met with Dr. Troy Justesen, Associate Director for Domestic Policy, who advises President Bush on disability policy. We also met with Mr. Steven Tingus, who is the Director of NIDRR. This was a good opportunity to learn more about this wonderful research institute for disability research. While we were visiting NIDRR, we also met with Dr. Richard Johnson, who is the Project Officer for the NIDRR Scholars Program. It was a great experience to actually meet and talk to the people I had heard so much about.

While I was at the NCIL Conference I participated in the March to the Capitol. I had never participated in anything like this before. Hundreds of other people with disabilities joined me as part of this march. It was a learning experience that opened up my eyes. There were many people with all different kind of disabilities that participated in the march. Even people with the most severe disabilities were fighting for their rights in this march. It showed me how a large group of people can work together to achieve a similar goal. While we were in Washington, DC we also had a chance to attend a press conference. At this press conference some Senators spoke about public policy disability rights. One of these Senators who spoke was Iowa Senator, Tom Harkin. He was a very powerful speaker who made excellent points about the disability community and their inclusion in society as full citizens. He made people want to take action to stand up and speak out for their personal rights. We also heard from Justin Dartís wife, Yoshiko. This was a great experience because I was able to hear from someone who has been in the disability movement since the very early days of formation. This same day we met with Congressional Representatives from the state of Kansas to and discuss issues that were important to the disability community. We advocated to these representatives to be more supportive of rights for people with disabilities. We talked, for example, about the importance of accessible housing and personal assistant services. I learned how to get an important message across to the people that can truly make a difference. This is something that will stick with me for a long time. Through this experience of attending the NCIL conference I have gained a better knowledge of disabilities and what I can do to make a difference. It is important for everyone to be involved in this disability movement. Especially for people whom disabilities. I learned advocacy skills, which I will carry on with me for the rest of my life. I will always remember my experience in Washington, DC There were wonderful people there who gave me great advice about my future. I am glad that I had the opportunity to attend the NCIL Conference.

This opportunity was made possible because of my mentor, Dr. White. He is the one who introduced me to the research and training center and to the NIDRR Program. He is a wonderful mentor to me. He has been very helpful while I have been a NIDRR Scholar and continues to give me excellent advice everyday. It is always a learning experience when I am with Dr. White because he teaches me so much.

KU Work Group considered for collaboration with U.N. World Health Organization

The Work Group on Health Promotion and Community Development, directed by Steve Fawcett, got one step closer to being designated a prestigious WHO (World Health Organization) Collaborating Center for Community Health and Development.

Dr. Maria Teresa Cerqueira, a representative from the Pan American Health Organization, conducted a site visit of the KU Work Group on June 2-3 and will recommend that that the Work Group be approved. Final word from WHO-Geneva is expected in late Fall 2003.

The World Health Organization, the United Nations specialized agency for health, is governed by 192 member states through the World Health Assembly. A WHO collaborating center is a national institution designated by the Director-General of the World Health Organization to form part of an international collaborative network carrying out activities in support of WHOís mandate for international health work and its program priorities.

Travis Thompson accepts position at Minnesota autism organization

Travis Thompson, MRDDRC investigator and Smith Professor of Psychiatry at KUMC, has accepted the position of Program Director of a large community based intervention program, FEAT, for children with autism in Minneapolis. He will have a joint appointment as a professor in the University of Minnesota School of Medicine affiliated with the Child Development and Neuroscience Center. Travis will begin his new position in August.

He is a native of Minnesota and earlier in his career was a faculty member at the university. He later directed the John F. Kennedy Center for Human Development at Vanderbilt University before coming to KU.

Travis directed the Institute for Child Development at KUMC and the KUCDD Kansas City projects, and served as a MRDDRC theme coordinator for Theme 2 ñ Risk, Prevention, and Intervention in Mental Retardation. Travis will continue to stay involved with several projects at KUMC.

Celebration of Dick Schiefelbusch’s 85th birthday and future of Life Span Institute set for July

If you still haven’t RSVPed to the Schief Bash and want to attend, call Cindy Roberts at 864-0566 by Friday, July 11. We’re going to reflect on the impact of Dick’s leadership in building our world-class research institute and, at Dick’s request, explore our common future. Hence, our theme is a Schiefelism ñ “If I hadn’t believed it, I wouldn’t have seen it.” Please join us as we celebrate our beloved founder’s continuing contributions and wisdom on Saturday, July 19.

Schiefelbusch to appear at the Dole Institute for Politics dedication activities

Our founding director, Dick Schiefelbusch, will be busy the weekend of his birthday celebration since he also will be making appearances as a former WWII POW at the Dole Institute for Politics dedication, the Greatest Generation’s Greatest Celebration. Dick, who spent two years in prisoner of war camps, will talk about his experiences as a German POW first on July 20 at 2 p.m. at the Lied Center as part of a panel, KU Goes to War, moderated by veteran newsman, Bill Kurtis, and again on July 21 at 4 p.m. at the Memory Tent, located in front of the new Dole Center on west campus.

Dick joined the U.S. Army Air Corps in 1941 and became a navigator on B-24 bombers in the European theater. He was captured when his plane was shot down over the Baltic Sea and spent two years in prisoner of war camps, including Stalag Luft III in Poland. The camp was the subject of the 1963 movie The Great Escape.

Life Span Institute in the News

Dot Nary, RTCIL Training Director, Glen White, RTCIL Director and Mike Wehmeyer, KUCDD Director and Beach Center Associate Director were moved to write a thought provoking op-ed piece after the recent attack on Josh Graves, a Lawrence teenager who was assaulted by other boys ostensibly because of his disabilities. They reminded us that healing and change come about through a foundation of hard won legislation protecting the rights and ensuring the opportunities of people with disabilities that is even now under threat. The piece is at: http://www.ljworld.com/section/opinion/story/135625.

Recent grant awards to Tom Skrtic, Life Span Senior Research Scientist and Cheryl Utley, Life Span Assistant Scientist that will benefit children with disabilities were mentioned in the Lawrence Journal World at http://www.ljworld.com/section/citynews/story/134308.

Honors

Steve Warren was appointed to the NIH Biobehavioral and Behavioral Sciences Subcommittee.

John Colombo was elected to the APA's Division 7 Fellows Committee.

Susan Palmer was elected president of the Kansas AAMR and Jennifer Lattimore was elected secretary.

Publications

Kathleen Olson and Jessica Hellings with Patricia A. Black, M.S., published two video/booklets on dual diagnoses with Brookes. Dual Diagnosis: Mood Disorders and Developmental Disabilities is described at: http://www.brookespublishing.com/store/books/olson-6490/index.htm and Dual Diagnosis: Schizophrenia and Other Psychotic Disorders and Developmental Disabilities at http://www.brookespublishing.com/store/books/olson-6245/index.htm.

Mike Wehmeyer along with Martin Agran, Margaret King-Sears and Susan Copeland have published Student-Directed Learning, Teachers' Guides to Inclusive Practices, also with Brookes. See http://www.brookespublishing.com/store/books/snell-3572/6210.htm for description.

Kathy Thiemann’s dissertation, Effects of Peer Training and Written-text Cueing on Social Communication of School-age Children with Pervasive Developmental Disorder, will be published in the Journal of Speech, Language, and Hearing Research.

This same study was recently presented as a poster at the Conference for Exceptional Children in Seattle and won an Outstanding Poster Session Award.

Presentations

Nancy Brady presented a poster titled Communication Breakdowns and Repairs in Young Children with Developmental Disabilities at the Symposium for Research on Child Language Development June 6, 2003 in Madison Wisconsin.

Steve Mills presented a workshop, Unlocking the Kingdom Gates: Designing and Evaluating Web Pages for Accessibility at ED-MEDIA 2003, the World Conference on Educational Multimedia, Hypermedia, & Telecommunications, Honolulu, Hawaii, June 23-28, 2003. This presentation is available online at http://media.lsi.ku.edu/research/present.html.

Other Professional Activities

Dot Nary and Katherine Froehlich Grobe participated in an invited symposium at Baylor College of Medicine--Improving the Health and Wellness of Women with Disabilities: A Symposium to Establish a Research Agenda.

Jackie Hampton served on the grant application review panel for the DHHS/Administration on Aging's Senior Medicare Patrol Projects June 17 in Washington, DC

Central Office News & Announcements

Research Design & Analysis

Todd Little, Director, Research Design & Analysis

First Annual RDA Summer Institute on Structural Equation Modeling

The RDA unit will conduct a weeklong summer institute on Structural Equation Modeling: Foundations & Extended Applications, August 4-8, 9 a.m.ñ5 p.m. at the SpringHill Suites by Marriott in Lawrence.

Todd Little, RDA director, and James Bovaird, RDA research associate, will teach the basics of SEM up through longitudinal and multiple-group SEM. The RDA team will provide hands-on practice with the SEM software package LISREL. The cost to attend the summer institute is $1500. There are a limited number of 50 percent fee-waivers available with proof of graduate student or postdoctoral status. For more information and to reserve a spot go to: http://www.kuce.org/programs/rda.

Project Development

Paul Diedrich, Associate Director for Project Development

Past Submissions not previously reported

1. David Lindeman submitted a sixth-year continuation “KITS: Statewide Inservice and Technical Assistance System: Infant-Toddler Component” to the KsDH&E on June 4, 2003.

2. David Lindeman submitted a third-year continuation “Southeast Kansas Community Action Program ñ Program Evaluation Project” to SEK-CAP on June 10, 2003.

3. Joseph Donnelly, Dennis Jacobsen and Debra Sullivan submitted a new, three-year proposal “The Effects of Dairy Intake on Weight Maintenance and Metabolic Profile” to the Dairy Management Inc. on June 20, 2003.

4. Joseph Donnelly and Dennis Jacobsen, submitted a new, two-year proposal “Synergistic Effect of Dairy Foods on Metabolism: A Mechanistic Study” via prime contractor, KUMC, PI Debra Sullivan, to the Dairy Management Inc. on June 20, 2003.

5. Lisa Bowman submitted a new, one-year proposal “ClassWide Peer Tutoring in an Alternative Education Setting” to the University of South Florida on June 27, 2003.

6. Cheryl Utley submitted a new, one-year proposal “National Institute for Urban School Improvement: Inclusive Schools ñ Good Kids, Families, and Schools” via prime contractor the University of Colorado ñ Denver, PI Elizabeth Kozleski, to the US Department of Education on June 30, 2003.

Upcoming Submissions

1. Stephen Fowler, Troy Zarcone and Susan Lunte will submit their competing continuation (renewal) “Biophysical Study of Antipsychotics Behavioral Effects” to NIMH on July 1, 2003.

2. Diane Loeb will submit her third-year, non-competing continuation “A Comparison of Language Intervention Programs” via prime contractor the University of Texas, PI Ron Gillam, to NIDCD on July 1, 2003.

3. Mabel Rice and Todd Little will submit their competing continuation (renewal) “Morphosyntactic Abilities of SLI Probands and Families” to NIDCD on July 1, 2003.

4. Mabel Rice, Todd Little, John Colombo and Steve Barlow will submit their second-year, non-competing continuation center “Biobehavioral Neurosciences in Communicative Disorders” to NIDCD on July 1, 2003.

New Awards (not previously funded) Information

There are 7 proposals (5 federal, 1 state and 1 foundation) pending award documents that we hope to report on next month.

Comments and questions to: lifespan@ku.edu


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